I have just been diagnosed with a genetic syndrome which includes issues related to the heart, eyes, and skeletal system. The statistics stand at a 50 % chance of my children having the disorder as well. I am not married, but am at the age of shidduchim ( I am female) I am really at a loss of what my next step should be because on the outside I appear to be completely healthy and normal and you cannot tell that anything is wrong. Do I go out with regular people, only for them to find out later of this disorder? I don't feel right doing something like that, I feel like the person should know before. But then again I don't exactly want ot go announcing that I am not healthy. I have seen advertised that Chai Lifeline has a new shidduch service called "sos tassis" in which they help people with medical issues. Do i contact them? The disorder unfortunately is progressive as time goes on but with careul monitering and annual checkups it can be controlled with different medications. The part that scares me the most is the passsing it on to my children. How can one become pregnant knowing that there is a 50% chance that the child will be born with the same disease? Is that fair to the child ? And who would want to marry somenoe like that anyways? I am really at a loss what to do in the aspect of shidduchim and don't feel comfortable talknig about it with anyone just yet. I am confused and depressed. Also, do you think I should talk to a friend about it or keep this information private?Please if anyone has advice to offer that would greatly be appreciated. Thank you very much

That's a tough one. I'm sorry you're going through this, and at the prime time in your life.....Chai Lifeline's program is a really good one, however, I would first contact your Rav and get halachic guidelines as to what you are mechuyiv to say and what not.I hope you have the strength to deal with the of shidduchim, and your condition.

Is your condition such that your future husband needs to be a carrier of the disease too? Also, have you talked to genetic counselors about what to do re: having children. I am not experienced in this personally, but I have a friend who tested positively with the guy she was dating through Dor Yeshorim, and she did talked extensively with genetic counselors. They didn't end up getting married so I can't tell you anything further, but I wanted to put the genetic counselor thing out there.

I'm so sorry you have to go through this. May Hashem send you the strength to deal with whatever hardships He gives you, and may He send your bashert to you soon.

no the husband does not have to be a carrier in order for it to be passed down to the children. It's different than other conditions where you are just a carrier. With this, regardless of your husbands genes there is a 50% chance that it will be passed down to the kids. I went to a genetic counsler - he is the one who gave me the official diagnosis. He said at the stage of the condition that I am at now it should not be a problem for me to have children, as long as I go to a high risk obsetrician and moniter things carefully- but that is just concerning me. He said the children who may be born with the syndrome will not neccasrily have it in the degree that I do - they can have it more severe or more mild. There is no way to know. What type of diseases does chai lifelines program deal with ? I don't think the average healthy person would want to go out with someone like me even though my condition isn't that terrible now , but it affects the children. Anyone who has advice please share thanks !

Please, get strength to do the right thing and tell the boy about it before the shidduch. My husband (I'm not blaming him) didn't tell me a word about anything. Now, after my first child, the truth is here. It's VERY hard for me to face it and live with it. I feel, it's really not fair from my in-laws, but then again everything is from above. Personnel opinion, if you have friends that ever discussed a medical condition about themselves with you, then I'd think about talking to them. If not, DON'T... You'll be the nebach and they won't understand you or help you.I really feel for you. I promise you, there's someone out there waiting for you (easy to say)..... Build the trust in your marriage the straight way and right away. Good Luck!!

you don't have to share, but i am wondering which specific condition you have-maybe there is some research out there on some form of treatment??in any event, definitely talk to a rav. a rav you are close with, and one that is experienced in this area. he will probably tell you that when things get serious with a specific individual then you should bring it up. but that is only my guess. s/o who truly cares about you and is the right match for you will want to marry you b/c of who YOU are. note that there are many conditions for which they can now do PGD, which is combined with ivf. this is pre implantation genetic diagnosis. When they check the embryo and test for genetic disorders. much hatzlocha, and a refuah sheleima PS i personally would not discuss it with others, 'though one or two close friends who can be supportive and be there for you is not a bad idea.

Thank you so much everyone for your supportI have decided I am going to tell one friend. I just feel bad in a way that I am only telling her because shes jsut going to get dumped with this burden now and cant even share it with anyone. Am i making sense? Anyways , as far as shidduchim, it's not really a matter of the boy caring abot who I am etc. I myself am not even concerned with my own health issues. I am just very worried about the children and I think this is a very credible reason for a boy to say no. There are currently no known cures for this, because the gene that is mutated is one that affects many differnet systems in the body, so it's not like one specific area i.e. the heart, wher they can target the genes over there or something. It affects so much more than that and is spread throughout the whole body. The only thing that could be done is to treat the individual systems. Boruch Hashem there are treatments and medication available but still it' really only treating the symptoms and as I said the condition is usually progressive as one gets older so I dont really know what lays ahead in the future.

Like a previous poster mentioned, you really should look into PGD. If there is an identified gene for whatever the disorder is, you might have a chance for it to be tested via PGD. Check with your geneticist.

i am not married and am in shidduchim as well. I am a carrier of a genetic condition that also only needs to be passed down through one parent. I have spoken to rabbanim about what to say to boys and how to say it and when to say it. This is a question that really needs to be addressed to a rav. As mentioned before, PGD with IVF is iy''h how I plan on having children so that I do not pass on this gene. If you want more information and details or just someone to talk to who is going through a similar sitution please let me know and i'll be happy to speak/email with you.

Oh , reading about your symptoms makes me think you have the same thing my very young cousin was just diagnosed with recently. I'm very close to her mother and her mother, is devastated. I dont know what to do to comfort her, or how to help her so I decided to look up this website and read thru the posts. nothing about this cousins syndrome was mentioned but now i think this is it. Is there a way i can pm you? I'm still not familier with how this works.

My son was born with a gen syndrome. We only found out later that one of us most likely area carrier. You diagnosis sounds something like what my son was born with - Im not sure what your diagnosis is but if you have any questions Id love to help.

We have close relative with a syndrome that has 50% chance of passing on, boy IS healthy though, but if kids got it could be much worse. Also could have healthy children with PGD via IVF... so we are looking for GIRLS that know they need to go down this route. Do you have a shadchan that we can contact?

As long as both partners are FERTILE, PDG/IVF is not so bad... Not to make it sound like its so easy... but very often, the problems, worries associated with it are due to fertility issues that prolong and complicate the whole proceedure.

You may want to contact Rabbi Shmuel Feurst in Chicago, who has a lot of experience on the issue and will be able to calm your worries. (Sorry, I don't have his number handy.. but I know it is elsewhere on this site)

wow it is a difficult situation i wish i can help you, while i defenitly agree and encourage you to talk to a rav u just wanted to remind all of you be'tevah there IS 50% chance your children will not get it and there is such a thing as tefillah wich increases the chances.i will pray for you (even though i dont know your name hashem will understand what i mean).

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